In my grade school days, I felt I was too smart to do my homework upon
arriving home. I would run out and play, putting off my assignments as the
evening hours wore on. Then in the morning, I found myself in a quandary.

Despite the desperate situation, I figured I could always make up for lost
time on the bus. Other kids would chat, laugh, compare lunch items, and do the
typical things kids do on a school bus. Not I. I would huddle in the back seat
as we hurtled over potholes and bumps, desperately trying to finish my homework.
For most of my classes, this system worked out fine. I still got A’s. However,
one class was an exception, and that exception was my math teacher, Ms. Wade.

Ms. Wade collected homework every day. And frequently, I would rise from my
seat, and plop on her desk one of the most haphazard, sloppy examples of
homework she had ever seen. It was crumpled, written as if on a thrill ride (if
you knew my bus driver, Mr. Barbour, you would understand), and chaotically
crammed in my pocket at the last moment. I always hoped Ms. Wade wouldn’t notice
the mess, but she always did.

This was the part of my day that called for “The Rationalization”. It was
time for my clever explanation as to why my homework looked like Godzilla wrote
it instead of a boy. Ms. Wade always demanded “The Rationalization”. I used to
think she did it to torture me, but now I really think she did it for her own
amusement. Or, I thought that perhaps she did it to make me squirm before she
marked points off my grade.

Looking back, I had some amazingly clever and humorous explanations. I told
her “Genius’s did their work that way”, or “Albert Einstein was sloppy, right
Ms. Wade?” I told her, cramming the homework in my pocket was all about
“organizational skills” and “Details cramp my style”. By the time I finished her
class, Ms. Wade had heard a lot of creative explanations justifying why homework
should be uninterpretable, sloppy, and impossible for her to grade.

At the time, I didn’t really understand Ms. Wade. I assumed that she just
didn’t know about important “guy” things like playing in the creek in the
afternoon, riding bikes, or fishing. But now, I have come to understand her side
of the story. She knew how to promptly spot a clever rationalization. I am sure
that, despite her unyielding countenance and unwavering commitment to quality
homework, she actually once in a while said to herself, “That was a good one,
Craig.”

Chronic fatigue syndrome (CFS) researchers also know how to tell some “good ones”. But unfortunately, we
don’t have Ms. Wade to clean up the mess. In a bitter twist of irony, one of the
sloppiest students to enter Ms. Wade’s classroom is going to be stepping into
her role of “rationalization hearer” today. The creative explanations that the
CFS research community present for the “integrative approach” of CFS research
are rarely challenged. This problem, and this problem alone, is the reason for
part four of the Shaky Foundation Series ---Rationalizing the Shaky Foundation.

Clinging to the Sinking Ship

Today there is widespread agreement that the CDC’s 1994 revised definition is
poorly conceived, leads to conflicting results, and contributes to low
standards. While this admission is a positive first step to placing chronic
fatigue syndrome
research on a sound foundation, it will not be enough to guarantee better
results in the future. If the CFS research community is again to earn respect,
CFS researchers will have to rethink some of the poorly formulated ideas that
they frequently espouse.

The 1994 CDC case definition was not a mistake that occurred in a
philosophical vacuum. There were widely held beliefs in the CFS research
community that led to its adoption. We will not see a more reliable case
definition for CFS until the widespread faith in many of these accepted beliefs
is challenged.

Many of these accepted ideas may be trendy and familiar due to constant
reiteration. Even so, they are far from logical. Time and time again, key
players in the CFS research community repeat them as if they were scientific
law. It is these ideologies that are providing fuel for the conflicting results
and the lack of respect for CFS research. These dogmas are widely accepted and
advocated by many of the CFS researchers who receive public funding.

These ideologies may be reiterated less from conviction than from political
convenience. Despite often being touted by the CFS research community as
appropriate scientific rationale to mix very different research samples, there
is little to suggest they are solid. The conflicting results seen in CFS
research, along with a failure of the supporting rationalizations to align with
real-world examples, convince me that they need a second look.

Fund Me! - How Political Needs Are Driving CFS Research

Since the adoption of the controversial name ‘Chronic Fatigue Syndrome’ to
describe several outbreaks of flu-like illness in the late 80’s, the CFS
research community has slowly broadened its scope. Much of that broadening may
be based on political and funding needs that are going unaddressed elsewhere,
rather than a legitimate desire to find the answers to CFS.

For instance, many psychiatrists want psychiatric illnesses to be taken
seriously. They want their profession to be as respected as other medical
fields. This aspiration may have been a propelling force behind the inclusion of
stress disorders and psychiatric illnesses in CFS research samples.

Sufferers of illnesses such as Fibromyalgia assert that their case definition
(defined by the American College of Rheumatology as 11 pain-sensitive pressure
points) is too narrow to describe the disabling range of the symptoms of
Fibromyalgia (such as fatigue and sleep dysfunction). This has created a
situation where many assume Fibromyalgia is not disabling without a concurrent
chronic fatigue syndrome (CFS) diagnosis. Instead of repairing the Fibromyalgia definition to include FM’s
full range of symptoms, these patients, as well as the doctors that research
them, have found a temporary solution under the broad, nondistinct case
definition of CFS.

Either way, these researchers and patients are likely supporters of keeping
the CFS case definition broad and non-distinct. It is clear, there may be some
unmet political and physical needs underpinning the current state of affairs in
CFS research. These needs are real and deserve attention, but one could easily
make the case that creating looser CFS research standards is not a justifiable
way to fulfill them..

Entrenching the Shaky Foundation, Rather than
Confronting It

When chronic fatigue syndrome (CFS) researchers come to the table again to work on a new case
definition, the politics that led to the formation of the revised case
definition will be even more ingrained than they were in 1994. Terms such as
“symptom overlap”, “co-morbidity”, the ever-popular “heterogeneity”, along with
the assertion that mixing fatiguing illnesses will “clarify” CFS’ pathological
nature, could all be repeated. These rationalizations of the current state of
low standards in CFS research have become more practiced and refined than ever.
In the end, the flimsy ideological base that led to the crafting of the 1994 CDC
CFS case definition will have to be challenged. These rationalizations are full
of some rather amusing assertions, new scientific “laws”, and creative modeling.
Let’s take a look.

Rationalization 1: Symptom Overlap is Overwhelming Evidence that Emerging
Illnesses have the Same Pathology

Just about all illnesses have some form of symptom overlap, especially when
you define symptoms such as “fatigue” and “pain” with very general terms.
Chronic fatigue syndrome (CFS)
researchers often have a tendency to define symptoms generally, so much so that
almost any fatiguing or emerging illness would have symptom overlap. What is
often not admitted is that symptom overlap can be a PRODUCT of low standards and
poor use of distinctions, rather than a reason to continue them. Even so,
“symptom overlap” is rationalization #1 when it comes to the low standards seen
in CFS research.

To hear some CFS researchers, you would think that they had discovered a new
scientific law. “Symptom overlap”, under the broad CFS case definition, is
repeated again and again as suitable justification to mix research samples, as
well as proof of the “sameness” of those currently receiving a chronic fatigue
syndrome (CFS) diagnosis.
The most prominent reasons cited for not subgrouping patients was that since
many groups share the general symptoms of pain and fatigue, they should be
researched and treated as one general “fatigue syndrome” based on “symptom
overlap”.

The following is an argument that is commonly repeated by CFS researchers who
draw public funding for Fibromyalgia:

“CFS is likely a spectrum of illnesses sharing a common pathogenesis with
varying degrees of fatigue and associated symptoms. Other disorders, such as
fibromyalgia, have overlapping symptoms with CFS, suggesting that both diseases
may share common physiologic abnormalities."

But other researchers have pointed out that this assumption is supported by a
belief that the broad, politically derived case definition has been effective in
producing clear results, which it has not. And secondly, this assertion uses
circular logic. Nancy Klimas, an immunologist at the University of Miami,
describes the danger this assumption creates: “…the case definition itself
contributes to the heterogeneity of the patient population, creating a shaky
foundation for CFS research.”

Symptom overlap is a poor argument for continuing the “integrative” approach
to CFS research. The integrative definition for chronic fatigue syndrome has not lead to consistent
results or findings. Instead of true clarification, conflicting outcomes,
different responses to treatment, and incompatible models for CFS have been the
rule.

But the problems with this idea go even farther. They clash with many real
world examples. Let’s suppose CFS researchers touting ‘symptom overlap’ offered
to assist the endocrinology community with their classification of
endocrinological diseases? For instance, diabetes mellitus and diabetes
insipidus both share thirst and fatigue; therefore, the CFS research community
could say that this must mean they are “sharing a common pathogenesis”.
Fortunately, endocrinologists would point out that one group’s symptoms worsen
after the consumption of food. Because the endocrinologists don’t ignore this
vital distinction, we now know one illness is an illness requiring treatment
with insulin, while the other requires the use of vasopressin. If
endocrinologists routinely ignored this distinction, they could cause much
suffering (and even death), despite the best of motives!

Examples like this illustrate the very reason why clinical distinctions are
both important and relevant to dependable scientific inquiry. It also
illustrates why “symptom overlap” should not be considered a reasonable
rationale for formulating clinical and research guidelines. The widespread
proselytization of “symptom overlap” as a justification to mix distinctly
different research samples may be politically motivated, rather than
scientifically pure.

Rationalization 2: Mixing differing fatiguing conditions into CFS research
samples leads to clarification of its pathology and treatment…

This rationalization would have truly amused Ms. Wade, but I doubt it would
have baffled her. CFS researchers have frequently stated that integrating
Fibromyalgia patients into CFS research samples will yield much clearer research
results, as well as save time and money. For instance, researchers such as
Mohammed Yunus and Simon Wessely have both confidently stated that the distinct
classification of emerging illnesses like CFS and Fibromyalgia can be extremely
counterproductive, drain financial resources, and require too much effort.
Wessely, for instance, says that by treating these illnesses the same a
researcher “avoids unnecessary investigation.” Yunus has stated confidently, “
If a satisfactory treatment is found in one, it is likely that treatment will
work in others as well.”

So, are they right? Have both of these researchers stumbled onto a novel and
innovative approach to medical research? Are classifications for emerging illnesses
counterproductive? Many CFS researchers are concurring with and even defending
these ideas. And, even many CFS patients have taken them up as an advocacy
strategy.

There is plenty of evidence to suggest this approach to research is fraught
with dangers and poor outcomes. What are the costs if Wessely and Yunus are
wrong? Poor treatments, conflicting results, and confusion would certainly
result. While conversely, the costs of classifying patients are minimal. Even if
this approach is later proven to have been unnecessary, it won’t have led to
confusion, poor treatments, and a slowing of progress. This is why a reliable
case definition for CFS will start with the assumption that emerging illnesses
are different, base those assumptions of the primary symptoms of each illness, and work from there.

When reading a CFS research paper, one has no idea of whom the patient
samples are comprised. Does this researcher include in his patient samples
people who have Fibromyalgia or MCS (multiple chemical sensitivity)? Does he or
she include patients with anxiety disorders or post traumatic stress disorder?
There is simply no way of knowing, and many CFS researchers seem to want to keep
it that way.

Rationalization 3: Being Exclusive is a Greater
Danger than Being Inclusive

The 1994 case definition warns researchers of the danger in being
“exclusive”. The authors took great pains to advise researchers to include a
vast representation of fatiguing illnesses in their research samples. This is a
popular rationalization for the broader case definition for CFS. Regardless of
this assertion, until markers for an emerging illness are found, it is safer and
more reliable for researchers to make sure their research samples comprise a
homogenous group of patients.

Would it make sense to include butterflies in moth studies just to be sure
you were not being “exclusive”? After all, both have wings, can fly, begin their
lives as larvae, and are worthy of study. How about being inclusive and placing
apples into studies on oranges? Both are round, sweet, and are even classified
as belonging to the fruit family. Here, it is easy to see that clinical
distinctions are not immaterial to effectiveness. A truly conscientious
researcher will be far more concerned that he has moths in studies of moths,
rather than be preoccupied by the idea that he might be unfairly excluding
butterflies.

The 1988 Working Case Definition was written as if it was more concerned
about homogeneous research samples. A CDC pamphlet from the early 1990’s
explains, “The case definition is deliberately restrictive to ensure that most
of the cases that meet it do in fact have CFS. Although many true CFS patients
may be excluded by this definition, a less restrictive definition would also
include a number of non-CFS patients”. What happened to this view? The
1988 definition was more in keeping with sound research principles. The CFS
research community abandoned this later on as the pressure to fund various unmet
needs under the CFS research wing grew stronger.

The idea that exclusiveness is a great danger to the research of emerging
illnesses is more than just a trendy idea; it is a bad idea as well.

Rationalization 4: Co-morbidity requires integration

Some researchers may cite co-morbidity as a good reason to encourage
integration of illnesses with differing distinct symptoms. This argument is
based on the suggestion that suffering from CFS may raise the likelihood that
someone will develop Fibromyalgia, MCS, or depression. Many in the CFS research
community claim this is a suitable rationale to treat, research, fund, and
manage these illnesses as the same disease.

For example, a widespread number of distinct medical conditions may result
from the long-term systemic damage of diabetes. What if the CFS research
community’s advice was taken, and patients with kidney disease, retinopathy, and
arteriosclerosis were mixed into diabetes research samples due to
“co-morbidity”? All of these conditions can result from diabetes. However, that
does not mean they are pathologically the SAME as diabetes. And, any researcher
who was told they were due to “co-morbidity” would be making a huge mistake and
creating a lot of confusion and havoc. This illustrates the danger of ignoring
distinctions and crafting an unreliable foundation based on a rationalization
derived from “co-morbidity”.

Rationalization 5: Different insults, different results = evidence of the
same illness?

This rationalization has many forms. One researcher may say “different
insults, same result”. Another might say, “different insults, different
results”. Still another researcher might say, “same insult, different results”.
And, still even more confusing, another researcher might say, “different
insults, different results, same illness”. Pass the smelling salts; I am getting
dizzy!

This rationalization supports the idea that the differences in the “results”,
and “insults” under the CFS case definition are interchangeable evidence of
uniformity. And, regardless of how these words are ordered, they always sound
the same. Remarkably, this rationalization often claims that there are so many
symptoms, treatments, causes, and differences, that these patients must have the
same illness! This rationalization is often based on an unwavering confidence
that the CFS definition is catching a homogenous group of patients.

In the Winter 2003 issue of The CFIDS Chronicle, one researcher explains how
vastly different symptoms, causes, treatments, could lead to the postulation
that all is well with publicly funded CFS research. He says CFS may be a “common
response to more than one insult”, like “arthritis”. “They all present the same
way as far as the patient is concerned, but their causes, treatment, and
prevention are completely different.” He rounds out this idea by saying that
current CFS research standards have painted a picture of a “common final
response to quite different causes.” This is a frequent justification for
merging various different fatiguing illnesses under the same research, advocacy,
and treatment approaches.

So how about it? Has he stumbled onto a new breakthrough? At the least he
could say you cannot prove, beyond a shadow of a doubt, that he was wrong. But I
think it is more likely that this rationalization ignores some severe problems.

As we saw in Part 2 of this series, it is very difficult to see vastly
different patients now included in the CDC’s CFS definition as “the same
response” or “presenting the same way”. Many of these patients appear much more
polar than they “present the same way”. It is an acceptance of the difference in
the DISTINCTNESS, severity, and other important clinical features that truly is
necessary to draw up a more reliable appraisal! Different forms of arthritis
have some very distinct common features, but many patients now being caught
under the CFS research definition are much more likely to have even more distinct
differences.

But a more striking a problem with this idea is how it appears if you really
think about it. Here is this extraordinary new equation:

You can be assured that if I came up with that equation in Ms. Wade’s class,
she would have sent me back to the blackboard. More differences don't add up to
an assumption of similarity. In addition, the addends in this
equation would lead most researchers to conclude that there may be different
illnesses now being funded under the CFS research structure. Even so, many CFS
researchers claim these vastly different results are evidence of the opposite -
sameness.

The truth is that differences in symptoms, treatments, and causes of CFS in
many patients could be as much evidence of distinctness as anything. And, this is far from a reliable justification for the current
"integrative" approach to CFS research.

Common threads

Above are some of the commonly-heard rationalizations for the current state
of affairs pertaining to CFS research. I can’t prove, beyond a shadow of a
doubt, that they are not true. However, I can prove, using real world examples,
that they are dangerous assumptions upon which to base both research methods and
standards. Unfortunately, that is exactly what has happened in the CFS research
community.

There is another common thread. All of the creative rationalizations for the
current case definition seem to downplay very unique clinical distinctions. A
distinct symptom of thirst after eating can give researchers clues as to the
pathological nature of diabetes. There is no reason why observing such
distinctions in the unique nature of the fatigue CFS patients couldn’t be useful as well.

Some researchers are challenging both the shaky foundation and the trendy
assumptions that proliferate within CFS research circles. I applaud these
researchers. But across the chronic fatigue syndrome (CFS) research community, you are more likely to find
a blanket of silence, rather than a demanding call for reform. Much of what is
funded today under the name “CFS” may be different illnesses, research models,
and special interests. To solve the problems in CFS research, those working the
case definition will have to acknowledge these problems and construct a new
foundation for CFS research that is based on reliable methods.

Wrapping It Up

Looking back on my grade-school days, I now realize that I deeply
misunderstood Ms. Wade. I thought she was my enemy; but in reality, she was my
friend. While my other teachers turned a blind eye to my inattention to detail,
Ms. Wade refused to budge on her time-honored standards. She knew very well that
if I continued to hand in crumbled pieces of paper, in a few years my reputation
would be sacrificed. She also knew that what may have appeared cute at my
current age, would not appear so cute later on. My freewheeling, sloppy,
approach to my homework would work fine for grade-school days; however, it would
lead to a loss of credibility, respect, and poor results if allowed to continue.

Ms. Wade also listened to my rationalizations. I’ll never know for certain
why she always demanded an explanation for my sloppiness. At the time I thought
it was for her own entertainment, or that perhaps she just wanted to see me
squirm. Looking back, I believe that once, just once, she dreamed I would tell
it like it was, instead of tell it like I wanted it to be. She wanted me to
stand before her and admit that while I did have reasons for my unintelligible
homework, they simply weren’t reliable or even reasonable. If I had done this,
she knew she would have set me on a more successful path.

One of the most challenging problems that those with CFS face is that their
friends, neighbors, and even family don’t believe their illness as credible or
disabling. The CFS research community, which generally polices itself, has often
compounded and contributed to this problem. When CFS research is often perceived
as lacking credibility and yielding uninterpretable results, it affects those
who suffer from the illness. It is more than simply a matter of churning out
research that suggests CFS is a behavioral issue, which it is not. It is more
than likely a problem of how that research is churned out. Those who suffer from
CFS are often seen as products of the conflicting, confusing, politically
generated research that often is produced by the CFS research structure. Their
sloppy performance can place us in the wrong treatments, lead to a delay in
progress, and add to the lack of credibility and controversy surrounding the
illness.

Like Ms. Wade, I just want an end to the “good ones”, the rationalizations,
and the poor results. As someone with CFS, I long for reform and respect to be
brought to CFS research. The Shaky Foundation doesn’t just affect the
credibility of the CFS research; it affects me as well. It is time for the ideas
that support the Shaky Foundation to be replaced with logic, credibility, and
reason. It is time for a solid foundation.